Powerful Photography Project Aims To Show The Impact Rare Medical Conditions Have On People And Their Families

“I decided to capture everyday scenes, but to put a twist into it so it made people stop and question and hopefully want to know more."

Ever since her son, Isaac, was diagnosed with a rare disorder, U.K.-based photographer Ceridwen Hughes has been on a mission to combat the prejudice those with the disabilities often face. So, she founded Same but Different, a community organization that aims to use art to raise awareness about disabilities and encourages people to look beyond their first impression of the people who have them. 

In the past, we featured Same but Different's photography series Rare Project which featured portraits of children with rare conditions. These portraits aim to shine a light on rare diseases and the impact they have on children.

The organization has launched a new photo series titled Rare Beauty in which Hughes hopes to raise awareness about medical conditions by inspiring curiosity. In each photo, she recreated every day scenarios people with rare diseases find themselves in, such as having surgery, receiving treatment, or meeting with a medical professional. However, the people in these photos are dressed up in stunning evening wear to highlight their personal beauty. Hospitals and doctor's offices may feel far from glamorous, but that doesn't mean the people who go to them aren't. 


"I wanted to create a series of images that encouraged people to want to know more about rare disease and the impact it can have," Hughes told A Plus. "For Rare Beauty, I decided to capture everyday scenes, but to put a twist into it so it made people stop and question and hopefully want to know more." 

Hughes worked with the Birmingham Children's Hospital and Alder Hey Children's Hospital to create these images. Everyone involved in the project is affected by medical conditions in some way, either because he or she is a patient, family member of a patient, or medical personnel. 

"I hope that people stop and look at the images and ultimately take the time to consider how far-reaching rare diseases can be. One in 17 people are affected by rare disease in the U.K.," Hughes said. "Chances are we all know someone affected and, yet, how often do we consider what that actually means to them and their families? If someone is a parent whose child is ill then they may need extra time off work, they may have long stays in hospital, or they may be living with uncertainty. It would be great if someone who saw these images and read about the people involved took the time to reach out to people they may know affected by rare disease and ask if they need help." 

You can see photos from Rare Beauty below and read a little bit about the people with rare conditions featured within them below.

1. Sabah

"When Sabah was one year old she was diagnosed with cancer in her kidneys which resulted in their removal and a need for regular dialysis. She was then diagnosed with lung cancer and required chemotherapy followed by radiotherapy as well as the removal of half a lung. Three years later. Sabah received a new kidney which changed her life. However, these failed several years later and she is now on dialysis four times a week. This has a huge impact on her day to day life and that of her family." 

"My condition affects the family a lot," Sabah said. "We can't go on holiday like my friends do because of my condition also sometimes when I am admitted to hospital the rest of the family feel a bit lost without me being there. They don't know what to do with themselves because we are one unit.  Sometimes they want to help but don't know how.  We have to plan everything in a certain way and have to take my dialysis into consideration whereas if we were a normal family we could do things when we wanted to." 

Read more about Sabah's condition here

2. Rory

"Rory is 18 months old and was diagnosed with congenital nephrotic syndrome at 1 month old," Rory's mom, Victoria, said. "He spent the first year of his life in Birmingham Children's Hospital (BCH) and was discharged on his first birthday.  He is a strong little boy and he is doing very well now, growing and developing, which is what we want.  I can't quite believe he is doing the things that he is doing considering how long he spent in hospital and being very ill." 

"Rory is very sensitive and he has had some really severe episodes that resulted in him being in intensive care on a few occasions. For me this illness either does one thing or another – you either get drawn closer to your faith or it drives you away from it.  For me I have found it has drawn me closer. I have spent a lot of time in the chapel at BCH and I have found it quite comforting. On the wards and intensive care there were lots of machines that Rory was hooked up to. The ward is a noisy place with lots of pinging going on. It is quite noisy so to be able to escape to the chapel and have a few moments to yourself and just re-charge, and pray obviously, did me the world of good." 

Read more about Rory's story here

3. Amara

"I would struggle to say exactly what Amara's conditions are as they are so extensive and complex," Amara's mom, Reena, said. "This is the other challenge we face because there is no other person in the world we know of with Amara's combination of diseases. We are in no man's land. It is hard, it is really, really difficult to cope with. The not knowing and my brain is constantly thinking about what is wrong with her, what is the right treatment, what is the right route to take because there is not anything to go by. There isn't a protocol to follow like you would with a patient with a typical disease. "

Read more about Amara's condition here

4. Isabella

"Isabella was diagnosed with Moebius Syndrome at 8 months old. A rare congenital disease which causes paralysis in some of the cranial nerves. This means Isabella is unable to frown, smile or blink, she is also unable to move her eyes from left to right, which affects her co-ordination and balance. When Isabella was younger she was fed through a feeding tube and had low muscle tone and vocal palsy, so she never really cried or made any noise," according to Same but Different. 

"The impact on us as a family has been huge," Isabella's mom, Carla, said. "I am constantly worried about the future. When you have a child you are always thinking about what they will be when they are older, who are they going to look like and so on. Now my worries are different and it really does turn everything upside down." 

Read more about Isabella's condition here

5. Olivia

"Olivia is 17 and does not have a diagnosis," her mom, Selina, said. "She has epilepsy, scoliosis (curvature of the spine) and has had surgery to put steel rods in it.  She is also in bowel failure and so she does not have anything to eat or drink at all.  Everything she has is through a line in her chest and a catheter that goes directly to her heart, to the main vessel. You have to be very sterile when doing any IV drugs, fluids or the TPN (total nutrition) through her line." 

"My husband and my son help and they do a lot of Olivia's care with me. We also have a brilliant team of doctors and nurses here who help if we need anything at any time. We can call on any of them and so we are lucky. At first it was hard but you just accept that this is the way of life now. It all becomes part of your daily routine. You just do it and because she is so happy and bubbly and always smiling and cheeky you just get on with it. 

Read more about Olivia's condition here


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